July 25, 2011
Quick Facts About
In TheBody.com's HIV/AIDS Organization Spotlight series, we focus on some of the true unsung heroes of the HIV community: the organizations that support and provide services for individuals living with, or at risk for, HIV. We profile some of the best in the U.S. and learn how they got started, what challenges they face and what's in store for them in the future.
This week, we turn our sights on Central Virginia and the AIDS/HIV Service Group (ASG). According to the Virginia Department of Health, 22,993 people were living with HIV in Virginia at the end of 2010. And between 2004 and 2008, there were more than 5,000 new diagnoses reported. When you add to that the ever-present spectre of HIV stigma (particularly in the U.S. South), the support ASG provides to the community is more important than ever. Today, ASG continues to provide services for those living with HIV, as well as prevention and education campaigns for those at risk -- just as it has for the last 25 years.
TheBody.com recently interviewed Peter G. DeMartino, the executive director of ASG.
What was ASG's original mission, and how has it changed over time?
Like many ASOs [AIDS service organizations], ASG began as a local response to the epidemic. Twenty-five years ago, community members came together to provide volunteer-driven support to people who were often abandoned by families and friends. We did all we could to help individuals die in dignity.
Over the past decade and a half, we have seen many changes, both in the locus of the epidemic and in the available treatments. With the advent of the Ryan White program and CDC [U.S. Centers for Disease Control and Prevention] and SAMHSA [Substance Abuse and Mental Health Services Administration] responses to the AIDS crisis, ASG began to provide professionally staffed programs, including medical case management, social services and mental health. In our history, we even ran a cooperative living house for those who had nowhere else to go.
Like many organizations in the American South, we witnessed the epidemic move beyond impacting primarily gay and bisexual men to becoming a symptom of larger social and economic disparities. As an organization, we began to focus on the web of causation associated with the disease -- and in many ways, our affirmation to serve people living with HIV regardless of ability to pay translated into serving only the most disadvantaged people living with HIV/AIDS.
As we enter our 25th year, we have in some ways returned to our roots and now have a mission more aligned to addressing the community impact of HIV/AIDS to include people living with, affected by or at risk for HIV/AIDS. Our new mission hearkens back to our founding, when we were less driven by federal and state policies and financial eligibility, and more concerned with helping people live fully despite the impact of HIV on their lives. Our mission today is: "Building Community for People Living With, Affected By or At Risk for HIV or AIDS."
What services do you currently offer?
With our mission transition, we have recently relinquished some of the federal resources which truly limited our capacity to address the disease in all populations. While we still remain the largest provider of housing services to HIV-positive individuals and families in Central Virginia, we have helped transition many Ryan White medical services back to the University of Virginia Ryan White Program. This facilitation of collocated medical support services in a hospital setting has allowed ASG to fully embrace our role as a client advocacy organization, less concerned with ADAP and filling prescriptions and more able to focus on the needs of all people impacted by HIV to make the most of their lives and their health.
In order to accomplish this goal, we have begun to build a vibrant behavioral health center with the cultural capacity and expertise to help people living with HIV achieve the highest medical outcomes; those affected by HIV to thrive despite the impact of the disease; and those at risk to truly address the practices and behaviors that lead them to live with risk. With a diverse portfolio of private and public funding, we are able to provide care coordination, supportive housing, mental health, substance abuse, psychosocial support, community building and advocacy programs equally to all people in our community, regardless of HIV or economic status.
What is the biggest challenge that ASG faces?
Like many ASOs, our future is uncertain due to both fiscal and cultural realities. As HIV becomes recognized as more of a chronic illness requiring a lifetime of disease management practices, the funding which was once available to ASOs is more and more limited. Perhaps more concretely, the restrictions on funding at the state and federal level which target certain populations, or areas of the country or state, or places limits on who we can serve dependent on financial needs, will never truly allow us to craft an effective, community-wide response to ending the impact of HIV in our local area.
Unfortunately, HIV is perceived as being less of a threat to community health than it once was. This has changed our visibility in the community, and the community's response to those we serve. Here in rural Virginia, stigma is what it was 20 years ago with little or no progress. Based in ignorance, this stigma is responsible for ruining countless lives. ASG continually develops innovative responses to apathy and stigma. It has most recently been active in moving beyond the closed conversations among ASOs and is beginning to engage other strategic partners.
Can you talk a little bit more about that HIV stigma you face in rural Virginia?
Stigma reduces our ability to encourage routine HIV testing, work with positive individuals on disclosure and help with access and maintenance in care issues. As the most northern of the southern states, Virginia also is often not included in specific funding opportunities geared toward alleviating some of the health disparities associated with the South, even though they are very much present in Virginia. Serving remote populations of individuals living with risk or HIV can present specific challenges with transportation and access to high-quality, culturally appropriate care.
What, for you, is the most rewarding aspect of working at ASG?
Having worked in HIV for more than a decade, I have seen many of the changes and challenges of living with HIV. Working in a small community allows me to see the direct impact of the work we do at ASG. Unlike in larger communities, we are the sole provider of HIV-specific services in an 11-county area. Some of our clients may travel up to two hours to be in a place where they are comfortable discussing their status, getting an HIV test or meeting with a peer group. While our work is challenging, our impact is tremendous.
What is one thing people probably don't know about ASG that they should?
We serve 10 times as many affected and HIV-negative individuals as we do positive individuals. While our primary goal is reducing the impact of HIV in our service area, part of our mission is helping people remain negative. Given our experience with the communities we serve, we are often able to identify and address needs for individuals that would not seek those services on their own.
Whether it is helping someone who comes in for HIV testing access substance abuse services or being the place someone turns to when they lose a loved one to HIV, our doors are open to the entire community.
What direction is the organization moving toward? Where do you see ASG three years from now?
We truly see the only future for combating HIV in a full community response to the epidemic on a local level. Much of our work is in building collaborations and developing integrated services to address the continuum of living a full and healthy life with HIV or helping to keep at-risk populations negative.
As I mentioned, we have been working to build the behavioral health capacity of our organization and our community to address those needs. While we hope for a future without HIV, we are working for a future where the impact of the disease is minimal in Central Virginia.
This transcript has been lightly edited for clarity.
Warren Tong is the research editor for TheBody.com and TheBodyPRO.com.
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